June 5, 2021

Just got off a zoom session with my sister and brother. We are suffering from decision fatigue since new things keep coming up that changes situations that seemed resolved just the day before. It’s like being sucked up into the air by a tornado, getting tossed around, and just when you get deposited on the ground, you’re sucked up again and you never know where/when you’re going to land.

Some of the decisions are about care for my parent’s condo and the expenses around that since my parents are residing in independent living and I’m managing their apartment. But mostly the decisions are around updating care levels because health and cognition keep changing.

My mother can’t keep taking care of dad on her own. The weekday aide we have (remarkable woman) is tiny and dad keeps getting bigger and falling. The weekend aide is studying to be a nurse and is going to take another job learning about medicines to make her a more desirable hire when she graduates. So what to do?

Right now, we were hoping to get my father into memory care. However, because he is such a fall risk and would be alone in a room at night, they don’t want to accept him, afraid he would get hurt trying to get out of bed alone. Ironically, if they let him keep a catheter in, he wouldn’t try to get out of bed at night, but they don’t have a medical license to handle catheter care.

We’ve got hospice involved and they recommend more hours with aides so mom can still live with dad and keep him at home.

I’ve gone to see a higher level of care community and they would take dad but now mom doesn’t want him to go she claims. “It’s not that bad. I’m just venting when I’m on the phone with you,” she told me yesterday. But is keeping dad with her really what she wants if she keeps complaining and starts crying about how hard all of this is for her? I got there to visit an hour after the aide left and she said, “This is SO hard doing on my own!” She was with him alone for only ONE hour! She’s walked away from him while I’m on a FaceTime call and told me to watch him because she HAS to take a nap. She has left him sitting on the toilet until he’s screamed enough times to remind her he needs her.

Emotionally, mom wants to be with her husband. Physically, she’s depressed, anxious, stressed and overwhelmed. She wants me to take over moment to moment care. But he’s my father and doing showers and wiping his butt is not comfortable for me. So how long will it be until something happens to her and then dad is left alone? A factor to include in decision making.

We are all concerned that dad can fall towards or on my mother and both of them will get hurt. We’re suggesting he stay in a wheelchair to avoid falls from walking with walker, but then he wouldn’t be moving around enough to keep edema from swelling up his legs. And he’s more prone to pressure sores if he doesn’t move to different spots every few hours. And now he’s dirtying his Depends several times a day and needs to be cleaned. He’s unstable to put in a shower with only one person helping to move him.

Dad speaks in words but he is talking about business deals he made before he retired, or selling homes he’s sold in the past, or finishing projects long since completed. Does he know where he is? He asks for mom. He seems to recognize me, even with a mask on. He talks to the robot doggie and smiles. It’s hard not be charmed by his innocence.

Every decision we make must take into consideration multiple factors:

  1. Financial issues: consequences to the nest egg and how long it will last, how much everything costs, logistics of managing the finances for each decision
  2. Physical limitations for my father and my mother: is it possible to move him without getting injured or causing injury? Do we have the proper equipment and tools to make it safe?
  3. Psychological and emotional backlash if dad starts getting upset because mother doesn’t come when he calls out and/or he feels like he’s been abandoned to live in an unfamiliar place without anyone he knows around him.
  4. Logistics: If we have to manage 12 hours a day of aides in an age of aide shortages, how do we keep consistent level of care at an affordable price? If we are moving dad into a new community, what happens if he cannot stay there and has to go back? Mom will have to take transportation resources from her building, ride-share programs and the public handicapped busing program, to get to see dad if he’s sent elsewhere; will that exhaust her or make her go less often? What happens in the case of a hurricane (it’s Florida after all) if mom and dad are not together? And so on…

I can take care of things once the decisions are made. But the process of getting consensus and trying to keep the best solution for everyone concerned within the parameters of what is available and affordable, is daunting and very draining. I have had no energy to focus on my paying clients and have had to relinquish clients to make sure these family decisions are thoughtfully considered and, once agreed upon, implemented with the least amount of disruption and distress.

What helps?

  1. Being organized and having my lists of resources already completed months ago is helpful and reassuring. I’m not scrambling.
  2. Having open and frequent communication with my siblings is ensuring that I don’t feel like I’m in this alone and it isn’t all on my shoulders.
  3. Living in a county that has so many resources for seniors and caregiving is a life-saver.
  4. Having my father receive veterans benefits has been super helpful.
  5. And now that Covid is not throwing such a big wrench into things, I am feeling the pressure easing up.

We, as a family, will get through this, no matter which decision we make.

We, as a country need to pay attention to how we support our caregivers because our business productivity as well as collective mental health depends on it.

Share your stories of decisions and resources to info@illberightthere.com.

I’ll Be Right There: A Guidebook for Adults Caring for their Aging Parents to find the checklists, workbook sections, tools and resources to help you avoid last minute scrambling is available at fernonamazon.com. To receive the fill-in digital version, contact me by email at info@illberightthere.com.